Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.

IZEA

45e38fe4f37dbb7d7816d217703971713d18d2562e71754a8f

Thursday, December 24, 2009

It's Christmas Eve and I am getting ready to go to my family tomorrow for the day. I am honored to be invited to a New Years Eve party on Long Island, but there are challenges getting me there, so I might not be able to go. The lady willing to drive me has an SUV with no back seat, so I would have to lie reclining in the hatch. If you are familiar with ALS, you know that I can't breathe in a reclining position. So I would need someone with a regular car in which I can sit up in a regular seat. Access-a-Ride does not go that far across the border into Nassau, and the Nassau Able-Ride would connect at Long Island Jewish Hospital, but doesn't operate after midnight, so that takes care of the return trip. To rent an ambulette would be prohibitive. There was a man who came up to me recently and gave me his card; he runs a wheelchair-accessible limo service. I'm sure it's expensive, but I will see if I can find the card. It's not easy being disabled and not have a wheelchair van. Those of you who do should count your blessings.

I received my modified wheelchair and got to give back the horror show loaner that was fit for a 350-pound man, and neither reclined, tilted, nor elevated. Wow, if ever I felt my hands were tied!! I couldn't nap, which was a real hardship, and I could hardly reach anything!

Enter my modified wheelchair, which has power footrests, so now I can elevate my feet to alleviate the swelling. It also has pads and guides to help me sit straighter in the chair, rather than leaning over to one side and it keeps my legs straighter rather than splayed. I look less freaky and more like a human being. However, I am higher, so I've had to get used to that, and the seatbelt that I recently paid $46 out-of-pocket to have installed, is too short. So when the wheelchair company comes after the beginning of the year to install my new tires, I hope they will be able to install a longer seatbelt.

Every five years we are entitled to a new wheelchair, but I am not due for that until 2011 because I got this chair in 2006. However, I am distressed to learn that MDA had to eliminate the $2000 grant to first-time wheelchairs. Without that, I never would have been able to get my chair, because the co-pay on a $25.000 wheelchair was covered by this grant. Every charity and non-profit agency has had to budget and remove certain services in this recession Both MDA and ALSA have had to eliminate their transportation program that gets many patients to the ALS clinics. Just another casualty of the economic crunch!!

Sunday, December 13, 2009

So I went back to the clinic at Cornell, and this time I met the Physical Therapist for the first time who told me that the brace [AFO] I am wearing is really for foot drop, not for the ankle pronation I have. So she said that I should only wear the AFOs when I have to stand, and not throughout the day. She also said I am on way too much medication, most of which isn't even working anymore, and is managing to zap my energy and zonk me out during the day. She and Drs. Lange and Wu are referring me to a spasticity specialist [they used the word "guru"] at the Hospital for Special Surgery to explore alternative methods such as botox injections, and they are really pushing the idea of a baclofen "pump", which I would use to put the anti-spasticity drug directly into my foot when I need it, rather than through my bloodstream to be wasted on the way down, and cause side effects like drowsiness. So I will see about all this

They are finally coming to take my wheelchair this week to upgrade and adjust it, including power footrests that I can use to elevate my feet. I have known that I have not been sitting comfortably in that chair for years, and it is nice to have someone finally listen to me, in fact mention it at first sight of me, because I had given up trying to convince any professional that all was not right.

As for nutrition, the jury is still out until I go to my primary care physician and get my cholesterol and blood sugar numbers again. But the dietician agrees that if I am going to put 4-5 cans of enteral feed down my tube, I need the lowest calorie nutrition possible.

My mantra has been not only "when one door closes, another door opens", but also the second part of that, which is "sometimes we stare at the closed door so long, that we fail to see the door[s] that have opened for us". I have wasted so much time in my life trying to salvage relationships that cannot work, that I could have spent on new projects, jobs, or people.